Today, April 2nd is World Autism Awareness Day. I am participating in Bloggers Unite in the hopes of raising awareness of autism and putting a face on what this epidemic means. I don’t pretend to be an expert, I can’t say definitively what the causes are and my opinions on what the USA could do are based solely on my own experiences but what I can do is share our story. If you are looking for resources on autism, please scroll down to the bottom of my post.
My son Nicholas will be 14 years old this summer, he was diagnosed with Asperger’s Syndrome at 9 years old. Asperger’s is an autism spectrum disorder, and shares many of the symptoms of high functioning autism, the primary difference being children with Asperger’s Syndrome generally do not have significant communication delays.
But that’s a rather clinical way of describing one of the most precious people in the world to me, so I will simply tell you our story.
Nicholas was born when I was just barely 21, not exactly a baby having a baby but fairly close as I was rather immature for my age. I had a few episodes of pre-term labor with him requiring hospitalization and medications and steroids to mature his lungs and he was born 6 weeks prematurely after I was diagnosed with pre-eclampsia. My labor was augmented by pitocin and after 3.5 hours of pushing, he was finally born via vacuum extraction. I’ve given up torturing myself over if any of this was the cause and if so was it my fault.
He was a healthy 6lbs 1 ounce and did very well for a premature baby. He was jaundiced and stayed in the hospital for 9 days for treatment. When we finally got him home, I fell sick with a huge infection and had to be readmitted for 3 days. Again, I wonder but have decided it’s useless to speculate if any of that was a contributing factor.
After that, all was more or less normal. There were a few weeks of colic, but nothing out of the ordinary for a newborn. I adjusted well to being a mother, no significant post-partum depression and besides being tired all of the time, it was a very happy time and we bonded well.
It was when he was about four or five months old that I first suspected that something was wrong with my baby. I thought he might have a vision or hearing impairment because he didn’t consistently turn his ears towards sounds and it seemed to me that his eyes often seemed to focus on the “wrong” thing. For example, when somebody would walk into a room, he’d track the door opening and closing rather than the person walking in. He was meeting all of his milestones and was happy and affectionate and when the pediatrician assured me that his hearing and vision were fine, I more or less put it out of my head although things would often feel a little “off” without me being able to articulate why.
You must remember that this was the mid-1990s and I think for most people, pediatricians included, autism was Rain Man and kids banging their heads and needing to be institutionalized and not being able to form any connection to the world.
As he grew, I noticed more things that seemed strange to me but nothing that rang alarms. He was on the late side of normal for talking and although he had enough words to not be considered delayed, they weren’t the typical words you’d expect a baby to learn. The first words we heard him say were “99 cents!” It took us awhile to realize he always said that when we drove past a McDonalds. Momma and Daddy came relatively late, he didn’t really seem to have need of a word for us. He was affectionate and happy but wasn’t terribly interested in sharing his world with us.
I had no idea at the time that what I considered so “off” about him was a lack of what is called joint attention. When I’d look at something, he’d wouldn’t look up to see what I was looking at nor would he reliably follow if I pointed it out. He would sometimes answer to his name, but not enough to be called consistent. He’d play happily with his toys but never was interested in showing them to me or having me join in his games. I assumed he was just very independent and although sometimes I’d feel a bit hurt, it was also nice to have a child that could play nicely by himself while I did housework or read a book.
Here’s where the joke’s on me, I always secretly thought that it was a sign of my good parenting that I had such a blissfully easy child. I’d listen to my friends moan about not having a minute’s peace and sympathize out loud but inside think if only they gently, but firmly enforced some simple rules they too could read a novel while their toddlers played quietly at their feet. Lest a lynch mob form to get me, I’ve had that theory proven wrong to me four times over now.
When he was a bit past 3.5 years old, he still wasn’t saying much but my father was famous in his family for not speaking until 4 because my grandmother catered to him and hey, weren’t a lot of exceptionally bright people late talkers? He had enough words that the peds weren’t concerned and all hearing tests came back normal. It was then that he became quite the chatterbox and I learned he could read. His lack of eye contact was explained as him being shy.
I’ve no idea how long he had been able to do this, he’d often sit looking at books but I assumed he was looking at the pictures. One day I was writing out a grocery list and he pointed at the word “pizza” and said “I like pizza”. I tested him by writing out many words, and sure enough he knew almost all of them, including “Microsoft” and “Windows”. I was amazed but I was an early reader, too and had spent many hours reading to Nicholas.
Shortly after that he started preschool and that’s when the problems and deficits became increasingly obvious. As he was an only child and I did not work outside the home, I was able to cater to his needs. Without even thinking much of it, I arranged our days so that we were very rarely in noisy, crowded, chaotic environments. The kids he played with were quiet and gentle and I indulged his interest in Pokemon and the computer. He spoke in a rather grown up way and often mimicked things he heard on TV, but that seemed normal enough for an only child who spoke mostly to his parents.
School was different, the kid were loud and boisterous and he had to do things he was not interested in doing. His teachers became concerned and asked that we have him evaluated. My mother, who had many years of child care experience, mentioned autism because of the lack of eye contact. We were told that wasn’t really a possibility because he was social and had great language skills by the pediatricians and that he’d grow out of it, smart children are often socially awkward.
Things were complicated by the fact that my ex husband and I were divorcing during this period and we often gave conflicting reports on Nicholas’s behavior at home. Somehow we muddled along but gradually things became worse at school. At home he was the sweetest thing imaginable and great fun to talk to and do things with. At school he would often cry and become agitated at the other children and not cooperate. Many times he seemed confused over simple things like where to stand in line.
By the time he was in third grade, he was diagnosed first with ADHD and put on meds, each of which made him morose and irritable. Then sensory processing disorder and finally Asperger’s Syndrome. When the diagnosis finally came it was a relief rather than devastating.
Finding treatment for kids with Asperger’s can be tricky. Most autism related treatment is not covered by insurance and most therapies cost upwards of $100 a session. The schools do provide some therapies, such as occupational therapy, speech therapy and modified classroom techniques, however a lot of times it’s a fight to get the services started and even then you aren’t guaranteed that the therapist will have specific experience in working with ASD students. Many, if not most, classroom teachers lack training in how to teach students with ASD and in my experience some will consider any sort of modifications as coddling.
A lot of times your fellow parents won’t understand and you’ll feel shunned. I remember being shamefully relieved when Nicholas began wearing a weighted vest to school each day as part of his treatment for his sensory disorder as I wasn’t the mom of the “bad” kid any more but one with real problems that could be treated with a vest, so they must be serious. I overheard whispers about why on earth was he also attending gifted classes when other people’s normal kids were not. A little girl told me that her mother told her that Nicholas acted out in class because he didn’t get enough attention at home.
It’s been hard, but all through it my son has done so well and I burst with pride for him. Imagine your mother teaching you to read faces with the emoticons on yahoo messenger! He does so much better now but sometimes I can still see him running through the steps we’re taught him in his head as he carried on a conversation: stop. listen. look at the face. the eyes will show you were to look. that phrase could mean two things, stop. what is most likely? stop. look at the face.
He lives with his father during the school year because the schools are much better there and they have a special program he attends. He’s extremely proud of his frequent flier status and is itching to be allowed to fly without being under the care of a flight attendant. Generally speaking in the world of adults he shines – you can tell he’s a bit eccentric, but he’s bright and he knows how to advocate for himself now. I see a world of possibilities for him, just the same as my neuro typical kids.
If you’d like to know more, here are some resources:
Mayo Clinic list of autism symptoms
O.A.S.I.S. Online Asperger Syndrome Information and Support
I have also started a thread on the IHMMB forums for people to share their stories and ask questions and welcome everyone to jump in.
Thank you for letting me share our story with you. I am so lucky to be the mother of Nicholas and if he ever somehow finds this and reads this, I hope that he knows how very proud I, his father, his stepfather and grandparents and brothers and aunt and uncles and cousin are of him. He really is a superstar!